About a month ago it was recommended by our physical therapist that Simon get braces for his feet and ankles. There was significant pronation and weakness and she wasn't seeing the progress that she'd hoped for.

I don't know why but for some reason this hit me so hard.

Simon's feet (among other things) have been through so much. First there was the special position that the left one was in when he was born. It had clearly been bent and tucked up underneath my bottom left rib (so that's what felt like a stake poking out from the inside!) and could not only be flexed back all the way to his shin, but could also turn completely inward and be in line with the rest of his leg.

Then there was the time in the hospital where every few days they would be testing for blood gasses and need to prick the heel for a few drops of blood. We were in the ICU for 113 days. I can't do the exact math but Simon's little tootsies were poked no less than 25 times.

We've worked hard at bringing his sense of footness back to a positive place. I've massaged those dogs, gotten him exciting socks, made trips to the local Foot Locker just for fun, and Jaime has even painted his toenails a lovely fuchsia all to celebrate the 'foot'. So when we learned that we needed to get his feet cast before they could make the SMO's (braces) I was already dreading the appointment as another one of those times where I needed to distract/hold my son down while something was 'done to him'.

Add this to the feeling of sorrow that Simon needed the braces in the first place and the last couple of days kinda sucked.

I prepped him. I mentioned it three days ago, then yesterday, and of course this morning. I don't overdo it. I just let him know that it's coming. The language goes in even if the meaning and understanding doesn't. I had the toys, the Ipod Touch and the towel (in case of throwing up) all prepared. I should have listened to the boy in the car and relaxed a little.

I'm already smiling from the "I feel special" comment when we get into the office. He says a robust "Hello everyone. I'm here." as he walks into the waiting room and follows up with "I want Trains".
Crap, that's the one thing I've forgotten.
Not to worry, the room that they put us in has a train table. We are blessed.
Our clinician comes in and right away sits on the floor next to Simon at the train table.
Laura: "Simon, this is TD. She's here to help us get your special shoes."
Simon: "Hello TD. Good Morning TD. I want a Hug."
And there you have it.
She hugs him.
He says he loves her.
She's charmed.
He's more than fine and we're off.

After she watches him walk and stand and tiptoe she agrees that the braces will be beneficial. It will take about 30 minutes to cast them. I'm still nervous

TD: "I'm just going to go and get my stuff and come back and we can get started."
Simon: "I love stuff. I want stuff. I love stuff."

She's back in less than two minutes and Simon is already into her bag of stuff before it's on the floor. He gets her to put the blue latex gloves on his hands instead of hers and while she's gone getting another pair he continues his "I love stuff" tirade.

He wants to hold the sticky casting tape, picks out his patterns for the plastic brace part and straps (Helicopters for the plastic sea creatures for the straps) and goes back and forth between watching a Sesame Street podcast (spectacular is the word of the day) and TD wrap his feet and calves. His right leg goes without a hitch, peep, or any bit of struggle and he only pulls back once as she wraps his left leg.

I can't express how amazing this is. How amazing he is. He is my special special.

I know every child is special. I've worked with children since I was 16. They're amazing and so much more resilient than us more 'mature' folk. Simon is an exaggerated example of this. He has been through so much in such a short amount of time. What is amazing to me is how deeply he has already learned to be present for each moment, celebrate the goodness and move through the harder ones. He will let you know when something is not to his liking for sure AND he'll also make sure that he latches on to what can be enjoyed while it's there. Most of the time it's people. If there is a person around to have a good time with, Simon will figure out how to have it. I know that this may get us into some interesting situations as he gets older but right now it's a huge gift for this little toddler man. (Already thinking of several inappropriate teenager or young adult situations that might not be great to attach that last thought to.)

I know I've said this before and there have been countless woo woo writings on how our kids can be our teachers..yadda yadda, woo woo.
Still, I gotta say that Simon is mine and one of the best that I've ever had (and I've had a few great one's). Speaking of great one's, my mom and dad put it into a lovely visual on the phone today.

Most of the time Simon and I are learning together, walking down this road hand in hand. Sometimes I carry him (he is a toddler after all) and sometimes I'm the one dragging or even digging in my heels. I'm stubborn when it comes to evolving. I will start to slowly slip back to walking in that rhythm of fear or mistrust. I do it regularly. That's when Simon ends up being behind me. Little hands placed gently on me (I would say my back but he's not that tall yet so it's really more around the bottom of my tush) pushing me forward until I gain enough momentum that he can hold my hand again as I try to keep up with his little evolved self. The one that requests that I be present in each moment for him. Especially the one's that he seems to be able to glide through much more gracefully than I.

There seem to be so many on this road of parenting a Special Special.

Thank goodness he's with me.

Fuckin' love him. I really do.

Why we will win Parents of the Year...

(where's his right hand? Holding on to a light bulb in a plugged in lamp..that's right)

About Us

Team Shimmy was started the day our baby, Simon (aka Shimmy), became suddenly ill (8/1/08) with a rare heart condition called Cardiomyopathy. That day, friends and family rallied around us to form Team Shimmy. This team, which has grown to include new friends and strangers from all corners of the world, has sustained us with love, food, kind words and listening ears.
We spent 4 tumultuous months in the ICU at Children's Hospital Oakland. Simon has been steadily improving since that day. He was fed through a tube in his belly (a Mic-key) until December 2013, was diagnosed on the autism spectrum, receives various types of therapies and is still on meds. Oh, and he's the happiest, most engaging kid we've ever seen. Jaime (Mama) works in public health and Laura (Mommy), a former school social worker, stays home to take care of Simon (and to take him to his MANY appointments). To see a 10-min documentary about our family, go to www.youtube.com/watch?v=uGh8dFp2oqk.
This blog is a chronicle of our experience thriving in the middle of a nightmare. You'll laugh a lot more than you expect. Promise.
Contact us at lafitch@gmail.com or jaimejenett@gmail.com